Dec 22, 2021: Started having symptoms of Covid
- Headache
- Scratchy throat
- Dry cough
- Aches and pains
- Fatigue
- No fever and no issues with sense of smell or taste
Dec 24, 2021: Visited urgent care and took PCR test for Covid-19.
Dec 26, 2021: Covid test came back positive. Took a Home Antigen test - was negative?!
Dec 28th, 2021: Starting to feel a little bit better, only slept 12.5 hours instead of 15+. Eye pain persists.
Jan 2022: Eye pain is extending to the rest of forehead now and tends to move around head and is persistent, increasing throughout the day. Tylenol, Tylenol 3 doesn't help. Tylenol Arthritis helps a little. Also have now added these symptoms:
- Ear pressure
- Tinnitus
- Nausea happens when I’m upright for long
Feb 2022: Daily headache persists. Started having issues with:
- insomnia along with extreme fatigue
- My heart seems to be pumping vigorously and loudly.
- Brain Fog
- Depression and whole body tension
- Tests: Dr ordered a quick brain MRI, which showed migraine activity all over, but no cause.
Mar 2022: Am on wait list for UW Long Covid Clinic. In the meantime saw a Neurologist. She ordered 2-hr brain MRI and new meds (weaning me off opioids, which means the main is much worse for about two weeks). Tinnitus and fast heart rate persist. Averaging 13 hours of sleep a night. Starting to notice breathing issues with the least amount of activity.
Mar 25, 2022: Diagnosed with Spontaneous CSF Leak and told to go on strict flat bed rest immediately. The leak was apparently so bad that it was almost all gone and my brain was “sagging” into my spinal column.
Rest of Mar-Apr 2022: Had a 2-hr MRI of my spine but they could not find the source of the leak. I was asked to stay on flat bed rest until I could be scheduled for a Blind Blood Patch.
Apr 28, 2022: Had blind blood patch today. Within four days my head pain was almost all gone!
May, 2022: Tinnitus and brain fog persist. Am very weak, but to be expected. Fatigue and breathlessness seems to persist as well. Doctor asked me to stay on bed rest, walking a little by little as tolerated. On waiting list to be seen by pulmonologist and cardiologist.
Jun-Aug 2022: Starting to have more issues with breathing and had to be rushed to urgent care. They gave me an inhaler, but it doesn’t seem to help much. Passed out as we starting going in to urgent care (my poor husband had to lift me into a wheelchair). Was a panic attack brought on by one of the inhalers I'm taking.
Aug 11, 2022: Saw cardiologist, who found that my crashed and my heart rate spiked up as soon as I stood. He diagnosed POTS, and prescribed a beta blocker to help stabilize my heart rate. No other issues with my heart were found.
Aug 16, 2022: Saw pulmonologist, who took every possible test and found my lungs to be healthy.
Sept-Oct 2022: Fatigue and tinnitus persist. Breathlessness is extreme; even having a shower or talking on the phone wipes me out.
Oct 11, 2022: Finally seen at UW Long Covid clinic. Dr reviewed and examined me and let me know that, realistically, I have another 8 months of recovery time. This floored and sent me into a bit of a spiral, but good news - I’ll be starting rehab at a PT clinic specializing in Post Covid recovery, and will start a Post Covid therapy support group next week.
Oct-Dec, 2022: Am doing PT twice a week and Support group once a week and it has been so huge for my mental health. Focus is on adapting to new way of life, accepting what is (since we don’t know what the future holds for Long Covid yet). I still have regular migraines, but if I take meds right after my “visual aura” begins and rest, I can stave off the pain. Learning to breathe makes it easier to get up and do short stints of cooking or talking on phone (20 min max before I have to rest). Learning about pacing myself and baby steps forward.
April 2023: As I've plateaued for the last few months, my specialists have now prescribed Naltrexone - an opiod-addiction medication that some long covid sufferers have seen improve their symptoms. There are some nasty side effects (stomach pain and nausea) but I'm hoping that it'll help. If this doesn't work, and June isn't my "magic month" then my Dr will have me enter a trial at Stanford that is also showing signs of success. Downside? I would have to travel there often to be a part of the trial.
Hopefully I will see improvement by June of 2023 (as predicted by my specialists). Fingers crossed!
